My 8+ Year Battle.
Presentation to the Institute of Medicine of the National Academies By The National Capital Lyme & Tick-Borne Disease Association
April 29, 2010
This afternoon we have heard some very important and impressive presentations. But they were presentations that were sterile scientific discussion. We must not forget that this scientific inquiry is motivated by the human experience of a devastating disease. It must continue to be motivated by that human experience as long as that motivation does not prejudice the scientific method.
Lyme disease patients face tremendous suffering and disability. One study found that chronic Lyme patients experience the quality of life of someone with congestive heart failure or osteoarthritis and suffer more impairment than someone living with type II diabetes or a recent heart attack. Despite the assertions of some researchers that we have the answers that we need, there is much to do in the area of Lyme research. There are many theories that have been studied, recommended further research and that deserve support to conclude their potential validity. As the Canadian Broadcasting Corporation (“CBC”) radio program: Ideas: The Bacteria Revolution reported over a decade ago: “Sorting out all the various symptoms caused by tick-borne diseases is no picnic, and both the detection and the treatment of Lyme are surrounded by controversy.”
Lyme disease patients are sick – sick of having their real life experience disclaimed as “anecdotal.” Researchers at Columbia University in New York City published a study in 2008 that added that the fatigue level in chronic Lyme disease patients is equal to that of multiple sclerosis.
4 comments:
I had a bout of Lyme in my early teens and my family went through hell getting me diagnosed and treated. I can't imagine what people with chronic Lyme must go through every day. Best wishes with your health.
Thanks honey pie! I am glad you are better....wishing some day we all will be. Hugs!
It's an up and down rotten carousel ride... the worst I have ever experienced and I pray someday I will be better and keep pushing on..what else can you do.. hope you are doing okay. .keeping you in my prayers as I know you do me too! Do you think they will ever find an answer when they don't even address it?
Honey you have it probably the worst Linda. We are all trying to push on & we all were told "it was in our heads" With 200,000-250,000 new cases a year they best look at it! My best friend said mosquitos do not carry it & dogs do not get that sick. Dogs die & people can die! Well we got off the phone & ASAP she sent me links how dogs do NOT get that sick & mosquitos do not carry Lyme. I fired back but had to go to websites etc. I think I took 3 steps backwards. I got scared to go out wen I was doing so well with my garden etc & art fairs. Not only mosquitos, flies, of course deer ticks. mice, birds & NOW they are saying if a woman is not diagnosed during her pregnancy it is past through to the newborn esp if she breast feeds. You & I go back when they swept it under the rug honey. We played in our GORGEOUS garden today & I sprayed down & still was afraid. People that are our ages that played outside NEVER worried that a bite could take your life away. We played outside until dinner than after dinner, we were covered with bites! And the children with Lyme & the arthritis & fibromyalgia & the brain-fogging is a whole other story. We are older & the kids have no cure either-they cannot remember what the teacher said, can't play sports. Fall out of their seats & the infections-they miss so much school. I just had a battle on my hands I know how bad you are suffering honey...Are you still bed-ridden? I decided that my avatars will be my 11th pik-line. I find people writing less & if I shock them-this is Lyme Awareness month & I pray NONE of them ever have to experience this. Love you honey-hang in their girlfriend. I wear my bracelet PROUDLY! In bed I started my own business! Love you honey. Be well.
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